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NORD
National Organization for Rare Disorders () is the voice of the community. Official U.S. sponsor of
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NORD 13h
Read the moving personal story of Neena Nizar, founder and president of the Jansen's Foundation, a NORD Member Organization. BioNews Service interviewed Neena at the Living Rare, Living Stronger NORD Patient & Family Forum in June.
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NORD 22h
REMINDER: Advanced pricing for the is ending this Friday, August 23! Don't miss your chance to save on the most highly anticipated event of the year in the community! Register here:
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NORD Aug 18
David C. Fajgenbaum, a scientist living with a rare disease, used an experimental treatment on himself - with surprising results. Read about it here.
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NORD Aug 17
Gavin is a hilarious, social and good-natured 11-year-old. He is also living with FG1 syndrome. Meet OK RAN ambassador Jade Day's inspiring son.
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NORD Aug 16
"Diagnosis" is now available for streaming on & follows various patients on their respective journeys. was honored to help spread the word about this opportunity when Netflix was recruiting patients for the show.
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NORD Aug 16
. invites anyone affected by pemphigus or pemphigoid to their next regional support group meeting in Austin, TX!
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NORD Aug 16
Are you interested in learning about the history of , what current therapies are available & what the future may hold? Join us for a webinar on August 29 to learn more & have your questions answered! Register here:
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NORD Aug 16
Don’t miss out on the most anticipated conference in of the year! (10/21-22) will provide the opportunity to discuss prioritizing action to make positive changes for ppl w/ . Register today:
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NORD Aug 15
We're delighted to announce that Acting FDA Commissioner, Norman E. "Ned" Sharpless will deliver the keynote address at this year's . Register today before pricing increases after Friday, August 23!
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NORD Aug 15
The power of patients and families to push for research and progress is inspirational!
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NORD Aug 14
Register for this free webinar “Low Risk vs High Risk MDS - what's the difference?" 8/21 to learn abt high-risk MDS versus low-risk MDS.
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NORD Aug 14
Next month, 9/20, & will host an externally-led Patient Focused Drug Development meeting on Pyruvate Kinase deficiency (PKD) in Hyattsville, MD. Register now & make sure to book your room by 8/18!
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NORD Aug 14
Join us for an exciting conversation on the past, present & future of coming up on Thursday, August 29! This webinar is the first in a 5-part series on gene therapy. We hope you can join us! Register here:
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NORD Aug 13
Register webinar “Advances in Preventing and Treating GVHD” 8/20 to learn about the latest advances in preventing and treating graft-versus-host disease(GVHD).
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NORD Aug 13
This week, we are pleased to welcome two new patient advocacy organizations to Team NORD! Please join us in welcoming &
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NORD Aug 13
Stay up-to-date with what's happening at & in the community by signing up for email updates:
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NORD Aug 13
The Rare Caregiver Repsite program is allowing Beth, a to a daughter w/ a , to vacation as hard as they can! Learn more about Beth's well-deserved & NORD's program here:
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NORD Aug 12
"Just be you and embrace every little aspect of you and only you."
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NORD Aug 12
: Yesterday, Today and Tomorrow - join for a free webinar on this hot topic in the community on August 29 at 12:00pm. This webinar is the 1st in a 5-part series on gene therapy hosted in collab w/ .
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NORD Aug 12
: & will kick off a new Data & Analytics platform during a launch meeting on September 17 in MD.
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